Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
Childhood Cancer Research Group, Danish Cancer Society Research Center, Copenhagen, Denmark.
Pediatr Blood Cancer. 2019 Aug;66(8):e27767. doi: 10.1002/pbc.27767. Epub 2019 May 14.
Childhood cancer affects the whole family and can have a lasting impact on parents of childhood cancer survivors (CCS). We aimed to (1) describe parents' perspective of currently experienced disadvantages and of their support needs during treatment, after treatment, and today; (2) identify characteristics associated with disadvantages and support needs; and (3) describe the use of existing support services.
In this population-based study, we identified parents of CCS (diagnosed ≤16 years of age, ≥5 years since diagnosis, aged ≥20 years at study) through the Swiss Childhood Cancer Registry (SCCR). Parents completed a questionnaire on perceived disadvantages (e.g., job-related, financial, etc.), support needs (e.g., job-related, financial, etc.), and socio-demographics. Cancer-related characteristics were available from the SCCR. We used multivariable multilevel logistic regression to identify characteristics associated with disadvantages and support needs.
An average of 24 years after diagnosis, one-fifth of parents (n = 59/308; 19.2%) reported disadvantages, and 7.1% reported support needs. Many parents had desired more support during (66.9%) or after (34.4%) their child's cancer treatment. Parents whose child experienced late effects (OR = 26.6; 95% CI, 2.9-241.0) or was dependent on parents (OR = 10.6; 95% CI, 2.1-53.7) reported greater current need for more support. Almost half of parents (43.5%) reported having used existing support services.
Many parents need more support during and after active treatment of their child's cancer, and some experience support needs and disadvantages long into survivorship. Better promotion of existing services for parental and familial support and setting up new services, where needed, may help parents in the long term.
儿童癌症影响整个家庭，并可能对儿童癌症幸存者（CCS）的父母产生持久影响。我们旨在：（1）描述父母在治疗期间、治疗后和今天所经历的劣势以及他们的支持需求；（2）确定与劣势和支持需求相关的特征；（3）描述现有支持服务的使用情况。
在这项基于人群的研究中，我们通过瑞士儿童癌症登记处（SCCR）确定了 CCS 的父母（诊断年龄≤16 岁，≥5 年，研究时年龄≥20 岁）。父母完成了一份关于感知劣势（例如，与工作相关、财务等）、支持需求（例如，与工作相关、财务等）和社会人口统计学的问卷。癌症相关特征可从 SCCR 获得。我们使用多变量多层次逻辑回归来确定与劣势和支持需求相关的特征。
在诊断后平均 24 年，五分之一的父母（n=59/308；19.2%）报告存在劣势，7.1%报告存在支持需求。许多父母在孩子癌症治疗期间（66.9%）或之后（34.4%）希望得到更多支持。孩子有晚期影响（OR=26.6；95%CI，2.9-241.0）或依赖父母（OR=10.6；95%CI，2.1-53.7）的父母报告目前需要更多支持的需求更大。近一半的父母（43.5%）报告已经使用了现有支持服务。
许多父母在孩子癌症治疗期间和之后都需要更多支持，一些父母在长期的生存中经历了支持需求和劣势。更好地推广现有的父母和家庭支持服务，并在需要时设立新的服务，可能会对父母有长期帮助。
